"I live in a society where I get good end of life care regardless of who I am, where I live, or the circumstances of my life."

What the citizens of Lancashire and South Cumbria say this means for them

"Everyone should be entitled to the same standard of care no matter who or what the circumstances."

"I need to know that care is available and how to access it when I need it, particularly overnight and at weekends as well as at different stages of my illness."

"I think every person is an individual and deserves the same care regardless of age, religion, sex, financial, personal circumstances etc."

"We all die, so being able to access the right care, at the right time and place although unique to me, should be equitable to anyone else."

Lancashire and South Cumbria commitments towards making this happen

• We will seek to understanding the palliative, end of life and bereavement care needs of the local population
• We will provide accessible services that respond to the diverse palliative, end of life and bereavement care needs of our communities
• We will continuously improve the quality of palliative, end of life, and bereavement services by evaluating their impact on the people that use them
• We will seek to understand the reasons why people might not access palliative, end of life care and bereavement services
• We will actively involve people/ organisations representing, different age groups, disabilities, illnesses and cultures in future service design and strategy development
• We will help people that are finding it difficult, for whatever reason, to navigate their way around palliative and end of life services more easily
• We will ensure that you have the care you need in the place where you would like to be cared for
• We will ensure that your family and those important to you have access to support and care, including bereavement support after you have died
• We will ensure that you have 24/7 access to someone that can help if you are struggling

Enablers and responsibilities

Enabler

• An all-conditions approach to palliative and end of life care - e.g. specialist palliative care representation at specific MDT’s e.g. neurology, respiratory, cross sector referral to GP palliative care registers, collaborations between palliative care and disease/population specific services
• Data dashboards are being used to collate, benchmark and inform priorities - e.g. representing a system wide response, used to set priorities, to understand and to remedy the reach of current services, use of standardised outcome measures/core metrics in service contracts
• Equalities and health inequalities impact assessment and action plan - e.g. addressing improved equity of access to services, reducing inequity of outcomes and experience, reflected in clinical pathway design e.g. homeless, prisons, mental health units, supported living, LGBTQ+
• All ages approach to palliative and end of life care - e.g. adults and children strategy, inclusive of services supporting the transition between childhood and adulthood. Standardised outcomes for children with life-limiting illness
• Service co-design and evaluation - e.g. involving people and organisations representing faith groups, cultural communities, all ages, and those with life limiting illness, strategy for seeking service user feedback to inform service development and improvement
• Electronic Palliative Care Coordination Systems (EPaCCS) - e.g. to provide consistent data that can be benchmarked across localities and regions
• Published list of providers of palliative and end of life care and bereavement support- readily available to the public and across the health economy to support future commissioning of services, and to facilitate partner collaborations  

Commissioner Levers

• Underpinning guidance detailed on page 11-4
• Joint strategic needs assessment
• Specialist level palliative and end of life care services specification (Adults) 5
• Enhanced Health in Care Homes Framework 6
• NHS Continuing Health Care fast-track pathway 18
• Universal Principles for Advance Care Planning 7
• NHS Virtual ward guidance 19
• NHS Chaplaincy guidance 20
• Clinical leadership and peer leadership throughout ICS, ICP and place-based partnerships

Provider Levers

• Named clinical and board executive lead
• Organisational palliative and end of life care strategy
• Place based partnership groups
• Annual audits
• Incident reviews
• Job roles and responsibilities
• Data sharing agreements
• Education and training
• MDT coordination
• Business intelligence
• Equality and diversity monitoring
• Co-work with children’s services
• Patient and public user groups
• Information Standard for End of Life Care8
• The Well Pathway- Dementia Care 22
• Dying Well in Custody Charter 23

Measurements of success

• Improved % of people on the palliative care register with a non-cancer diagnosis
• Evidence of increased diversity of people accessing specialist palliative care services e.g., age, ethnicity, geographical areas, primary diagnosis
• Reduction in hospital admissions in the last 90 days of life
• Reduction in hospital admissions from care homes in the last 90 days of life
• Survey of service users and bereaved people (consider Place or ICS wide approach)
• National Audit for Care at the End of Life (NACEL)
• Patient case studies
• Achievement of preferred place of death
• Place of death by ethnic group
• NHS continuing health care provision - who is receiving it, how soon before death
• Delays in transfers of care/discharges including to care homes

NB: Baseline measurements should consider skewed data arising due to COVID-19.

Best practice examples

Admiral Nursing Service-Fylde Coast

Coverage: Based at Trinity Hospice

Lead contact: Admiral nurse Maxine.emslie@nhs.net

Brief description: Admiral Nurse at Trinity Hospice will help people access dementia care - Dementia UK Admiral nurses are registered nurses who specialise in dementia care, working with families and people affected by dementia, particularly during complex periods of transition.

Outcomes: Are achieved through casework, coordination, groups and/or clinics to;

• Promote physical, social and psychological health of family carers and people with dementia
• Improve well-being and quality of life for people with dementia and their family carers
• Enhance adjustment and coping strategies for people affected by dementia and their families

Advanced Dementia Support Team - Cheshire

Coverage: Cheshire West & Cheshire East Place

Lead contact: Jenny Casson, team leader tel 01270 310260 jenny.casson@eolp.org.uk

Brief description: Advanced Dementia Consultancy | The End of Life Partnership (eolp.co.uk) The Advanced Dementia Support Team (ADST) are a small multi-disciplinary team of specialist professionals working across Cheshire East and Cheshire West and Chester. ADST provide consultancy to professionals or family carers caring for someone with advanced dementia who requires 24/7 supervision, either at home or in a care setting. The service aims to guide and educate professionals and informal caregivers in the delivery of best practice for people with advanced dementia.

Outcomes: Respond to referrals from professionals and informal carers who are caring for people with advanced dementia and seek guidance or education. Deliver education and information to clinical teams, care services and informal carers on the nature of advanced dementia and likely deterioration. Support clinical teams and care services through the delivery of care home clinics & by attending multidisciplinary meetings. Support clinical teams, care services and informal carers to identify the possible causes of behavioural and psychological symptoms of dementia. Support clinical teams, care services and informal carers to implement Best Interests Advance Care Plans.